Hello dear forum members,
Last month I filmed a conversation with beloved Barnclown talking about Lupus at birth, patient-doctor dynamics and self-management over the years. This month I sat down with my friend Daisy and we discussed being diagnosed with Lupus as teenagers, losing friends, impact on our siblings, social media - but our primary focus was on mental health and the ways multi-system disease really fractures our mind and spirit.
Here is the first video, discussing being a teenager with lupus, at school, impact on our families, especially siblings, and dealing with social media:
And here is part two, talking about mental health, being sent to psychiatric liaison, multi-system fracturing of our minds and bodies, trying to make friends understand our lives, changing benefits from DLA to PIP, job discriminations and finally, creative survival techniques - writing and cosplay!!!
We covered a lot in our two chats. I really hope some of or all of it speaks to the universal experience of our complicated lives with lupus or any multi-system auto-immune illness, young or not so young (even though we are all, obviously, eternally young!!)
Big hugs, Shaista (& Daisy)